A State of Limbo

We visited with Michael’s oncologist this morning, the first step in following up on the questionable results of his recent CT/PET scan a couple weeks ago which I wrote about here.

I remember when we got that first phone call almost three years ago from the doctor who discovered and diagnosed Michael’s cancer and would eventually surgically remove it. It’s a phone call that changes you forever – both the patient and the spouse. In a matter of seconds, you lose a certain sense of innocence, a belief that certain terrible things can’t touch you. Suddenly you are reeling, the breath knocked out of you, and you wonder if you’ll ever be able to breathe again. And from then on, the sense of safety you once knew is forever altered, diminished.

The next step was to meet the oncologist for the first time, who would explain to us the staging of Michael’s cancer and a plan of action. I didn’t want to go to that first appointment with Michael. I was terrified of the news he might give us, and a cowardly part of me thought that by not facing the oncologist – who seemed to hold our very lives in his hands – I could insulate myself from whatever terrible truths there might be. My midwife is actually the one who made me go with Michael. “You have to go, Lisa,” she told me. “You can’t let him face that alone.”

So I went, and although the news was bad (stage 3 cancer which would require major surgery and a year of treatment), it wasn’t as bad as it could have been. I instantly fell in love with Michael’s oncologist. He was warm and down to earth and spent lots of time with us, and when he said, “You don’t have a foot in the grave yet, Mike,” in his New York accent, I truly had to stop myself from getting down on the floor and kissing his feet through my tears.

There was a part of me that didn’t want to go to the appointment this morning either, although I knew we weren’t going to get any definite answers. But I was afraid of which way the doctor might lean – would he seem extremely concerned? A little concerned? Not at all concerned? Would I be able to trust whatever he told us and not feel like he was trying to bullshit us or shelter us? Would he take one look at Michael and listen to his symptoms and get a grave look on his face?

But coward or not, I went. And honestly, there’s just not a lot to report. Dr. A took some blood (routine), did a quick physical exam (and didn’t find anything of concern), went over the results of the CT/PET scan (ambiguous), and asked Michael questions about how he’s been feeling.

Here are the questionable/possible issues of concern:

Recent CT/PET scan revealed an area of concern – specifically, higher than normal metabolic activity – in Michael’s liver. The liver is a location to which the type of cancer he had does often metastasize.

Michael has been experiencing pain in his upper right side where the liver is located.

Here are the positives:

All of Michael’s checkups – which happen very regularly – have been good.

Although his recent scan revealed this area of concern, it’s ambiguous at best, and could be consistent with a number of things besides cancer. The CT portion of the scan did not reveal any obvious lesion.

Michael’s appetite and weight have remained stable and he generally feels fine.

He’s not jaundiced, and although he is experiencing pain in his upper right side, there is no abdominal distension, nor could his doctor detect any enlargement of the liver by physical exam.

The bottom line is that we just don’t know anything at this point. His doctor is “underwhelmed” by Michael’s symptoms, but thinks the situation warrants further investigation. So Michael is scheduled for a more detailed, diagnostic scan Thursday morning. With any luck, we’ll have at least some preliminary answers before the weekend.

I’ve lost a lot of sleep and shed a lot of tears over this. Suddenly our whole life seems in a state of upheaval and turmoil again, and we have no answers at the moment. Possible pictures of a future with Michael ill and incapacitated by chemo again, or a future with Michael gone – and me with another baby on the way! – fill me with terror.

Whew, one step at a time is necessary, but it’s hard, hard. I don’t know if you’ve read this far back in our blog, but two years ago I was diagnosed with a brain tumor. I had surgery, but they couldn’t remove it all, so now my life is lived in that place of uncertainty you’re describing. Fortunately all the check-ups and MRIs have shown no tumor growth, and I’m feeling good and fully functioning. I may live another 40 years, I may have to deal with a growing brain tumor, or I may get hit by a bus.

Uncertainty. Sometimes I can get into a zen place about it, but often I find that it motivates me to identify my life’s true priorities, which is good.

I am so sorry you are going thru this right now. My husband was diagnosed with testicular cancer last Feb and went thru chemo and surgery. So far all his checkups have been clear but yea, this whole thing totally sucks :( We have 4 young children, 10, 9, 4 and 2.5, which I think, does make things harder. I hope this turns out to be nothing for Michael. Stay strong!